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Wednesday, March 23, 2011

Rebecca

Mom to Liam Maximilian

January 3rd, 2011

Anchorage, Alaska

My husband and I had been trying for 2 years and finally after our second IUI we were pregnant. We were so excited that finally the stress of fighting infertility was gone. I am a worrier though so when asked about getting the prescreen done, to check for birth defects, I had to do it. This resulted in more worrying then since the results showed us that our baby had a 1 in 30 chance of having a neural tube defect. I tried to stay optimistic, that there was still a chance my baby was perfectly healthy.

At our 20 week ultrasound to find out the sex of our baby it was discovered that not only was I having a little boy but also that he had hydrocephalus caused from Spina Bifida and we needed to go see a Perinatologist to find out the exact location and extent of his back lesion. After seeing the Perinatologist we learned that my poor Liam had a very bad case of Myelomeningocele and showing all of the classic signs. We also learned that day that there at been a research study going on called the "MOMS study" that was comparing 200 babies, half of which will receive fetal surgery to correct the spina bifida before more damage is done and after the baby is born which is the way it is commonly done. Doctors had brought up abortion to us, but that was not an option, I was already way to in love with my little Liam. This MOMS study sounded like an incredible option though, to have a chance at giving our little boy a chance at a better life. The day we called about the study we found out it had just ended the week prior due to efficacy but they were going to allow 10 moms to electively get the fetal surgery if they passed all of the tests needed to do it. This news actually made us even happier because we knew now that the fetal surgery had proven to be helping these babies and since we wouldn't be in the study we got to choose to get the fetal surgery, whereas in the study it was randomized who got which surgery. By this point we were at 23 weeks and the requirements to have the fetal surgery said it needed to be done by 25 weeks and 6 days. Not much time to get a lot done, especially since it was the holidays. I got an amniocentesis on a Monday and when the results came back that Wednesday that they were good I started to make plans to go to San Francisco where the surgery would be. We were told that if my baby passed the rest of the tests, which included an MRI, ultrasound, and echocardiogram that we would have to be prepared to stay in San Francisco until he was delivered by c-section at 38 weeks. I had already planned to go home and see my family for Christmas, and although it was still early in my pregnancy, we had a baby shower. How grateful I am now that my baby got a baby shower.

We arrive in San Francisco two days after Christmas and spent the next five days going to and from UCSF Children's hospital and Fetal Surgery Center to finish our tests and meet with all of the surgeons and other staff that will be taking care of my baby and I. We also got in a lot of sightseeing and walking because I knew once we had the surgery I would only be allowed to very minimal activity for awhile. On January 2nd at around 9pm we checked into Labor and Delivery. We didn't get much sleep that night with doctors and nurses coming in and out all hours of the night to prepare me for surgery the next morning. Liam was kicking all night long and even the next morning when we woke. I kept telling him he was going to have to settle down because we were going into surgery soon. Little did I know that was the last time I was ever going to feel my little buddy kick. We got put under around 8am Monday January 3rd and I woke up around noon in recovery. The worst thing a mother ever has to hear is that your baby had to be delivered and he didn't make it. The doctors said the surgery went well but when they were putting the last stitch in me Liam's heart stopped. I then got an emergency c-section to get Liam out so the NICU team could try and resuscitate him. I was told they gave him aggressive CPR for an hour and a half but he never responded.

So what do I even do now. The first week in the hospital I was in complete shock. Having to be on the Labor and Delivery floor hearing other babies crying was even more heartbreaking. My husband and I got the chance to spend 2 days with Liam before they took him for his autopsy. We were very hesitant on wanting pictures of him taken at first. Thank god that the nurses convinced us to allow them to take pictures, we only have a few but they are so meaningful. We spent a lot of time crying and asking why? The doctors told us also that he was the first baby that they lost during this kind of fetal surgery and the autopsy showed nothing. I think not having any answers is the worst part of all.

A week after leaving the hospital we had his funeral back in Grand Forks, ND so he could have a funeral with family. We will be going back there this spring also, hopefully mothers day for his burial. I am saddened that I won't be able to go to his grave as often as I'd like since Alaska is a pretty long flight and even longer drive, but I know he is in a good place there because he is getting buried on top of Derecks father. His due date was April 12th, that date doesn't really have much meaning to me anymore since he would have already been born by c-section at 38 weeks if we would have made it that far, but I guess know matter how you look at it I would have had baby by either date.